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Sunday, April 18, 2010

Lessons learned on the wrong side of the stethoscope

I was walking down the hall at work on a very ordinary day in December. I had sudden onset of excruciating right shoulder, neck, and upper arm pain. For the first time in my life, the "...if 10 is the worst pain you can imagine" finally had meaning. It took my breath and brought me to tears. I took the Tylox I had been given after childbirth (two years ago) with little relief. By the following evening, I was markedly weak in my (dominant) right arm abduction and external rotation. I couldn't even lift a fork to my mouth righthanded without using my left hand to prop up my right elbow. The next 48 hrs were a whirlwind: emails, calls, and pages to my internist (I am usually a once a year-ish whether I need it or not patient), a possible diagnosis of multiple sclerosis, MRIs of my brain, spinal cord, shoulder, appts with ortho, neuro, and ultimately neuromuscular, including the test that provided a diagnosis: an EMG/NCS. The diagnosis was something rare called Parsonage-Turner Syndrome. I had never heard of it before (which is a very bad feeling as a doctor).

So, what have I learned from this experience of being on the wrong side of the stethoscope? A lot that I am still struggling to put into words and a lot worth sharing.

First, no matter how exciting a case is, how rare, how great a learning opportunity for you, etc, you MUST NOT say this or show your glee in front of the patient. I know such excitement can be hard to contain as a newbie medical student or doctor. I, in fact, have a very experienced internist who nonetheless said "Isn't this cool?" to me during my annual appt on multiple occasions once the diagnosis had been established. As a doctor, I know what she meant. I do recall my days in general internal medicine, when I thought I might fall over dead before the end of clinic if I had to fiddle with the dose of one more antihypertensive. I KNOW what it's like to need a good case to spice up the day. I KNOW this was an awesome medical mystery with a rare diagnosis and ultimately a good long-term prognosis. What could be better, right? But the bottom line is that I am still markedly weak, now 4 months later. I still can't pour milk for my kids from a gallon jug, hold my 2 yr old in my right arm, or lift my work bag right-handed out of the passenger seat when I get out of the car. If I were, for example, an orthopedic surgeon, my career would be over or at least on hold for probably a year or more. It has been life-changing for me, and not in a good way. So, yeah, it's cool for the doctor. Yeah, it's a great case to present (and yeah, I agreed to suffer the indignity of being presented as a case in a conference I used to attend showcasing rare diagnoses at my former residency program, at the hospital where I am still on faculty). But, as the patient, it was decidedly NOT cool. I cringe to think about all the times I presented patients on rounds or in conferences with what I'm sure was obvious excitement over this "great case". Patients, please forgive me.

Second, a little kindness goes a long way when you're in a medical crisis. When I had my first C-spine MRI without contrast, it had motion artifact but was read as potentially consistent with demyelination. As I lay there alone on the MRI table having my repeat C-spine MRI and brain MRI with contrast to look for MS and other badness on a Thursday afternoon, I had a lot of time to worry and grieve for the normal life that seemed to be receding into the past very quickly. When the tech, whom I knew could spot an MS plaque or a met on those MRIs as well as any radiology resident, came in afterwards, I begged her to tell me if she had seen anything bad. She told me that she wasn't authorized to give me any information and that I should be able to get the report in a day or so. I knew that, of course, as a doctor. But, as a patient, I couldn't bear another moment of waiting. My eyes welled up with tears as I went to leave. She hesitated a moment, then put a hand on my shoulder, looked right in my eyes, and said, "Dr. Tempeh, you have a WONDERFUL weekend." It was her code to tell me that things looked ok to her eye. I remember it as one of the greatest acts of kindness I have ever experienced.

Third, it is a really worthwhile and eye-opening question to ask a patient how a medical condition is impacting her life. The first and only doctor to ask me that to date (and I saw several along the way) was actually the neuromuscular specialist. I think that question got him the most accurate picture of the extent of the neurological impairment--I told him that I could no longer use a pitcher of water to rinse my kids' hair in the tub because I was too weak to lift it, that I had quit blowdrying my hair because I could no longer do it right-handed and it turned out weird if I did it left-handed, and that I had quit leading a certain conference because I couldn't hold my right arm above shoulder height for more than a minute or two to write on the dry-erase board. It didn't take him long to ask or for me to answer, but it felt much more "real" than his assessment of my strength through a standard neuro exam, even though the neuro exam ultimately showed the same. I didn't realize how frustrated I felt by these losses until I had a chance to reflect on them and share them with a doctor who showed an interest. And the sharing was therapeutic for me in and of itself.

Finally, validate your patients. As an internal medicine resident, I was never good at taking care of the patients with fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome. I had always been taught that the best way to approach these patients is to validate their symptoms--telling them "I know that you are in real pain," etc. I couldn't ever do that, or not very well anyway. In my heart, I wasn't even sure these were real diseases. I have to tell you that although I have never been eager to hear my name and the word "disability" in the same sentence and that I still hope never to take advantage of the disability policy I have been paying for since residency (which you should get by the way), it was a relief when the neuromuscular specialist said after examining me and doing my EMG/NCS, "You have a real disability. This is something called Parsonage Turner Syndrome." It all happened so quickly, the development of weakness literally over the course of hours, to the extent that I struggled to wash my own face and dress myself. For days as the diagnostic workup went on, I vacillated wildly between being convinced that I had something devastating--a demyelinating disorder, brain metastases, something--and that I, a previously healthy person, had for some reason actually gone crazy. Just hearing from someone in a position of medical authority that I was not crazy--that this was real and had a name even--inspired my total gratitude. I wish I could go back and have a do-over now with all of those patients. I could have done so much better for them.

18 comments:

We try to get our students to do what you mention when taking a psychiatric history: flesh out the impairment, validate the pain, indicate understanding, and so on. I suspect that coming from an internist, your messages carry much more weight. I hope you will continue to remind students of the importance of these points in every medical setting, not just "on psych."And thank you for sharing such a difficult and frightening experience.

I'm so glad that you don't have MS and that the prognosis is good. (I hadn't heard of Parsonage Turner Syndrome either.)

You hit on some of the most important things to me about the neurologists I rotated with who made me love the field. They seemed genuinely interested when you could tell them details about how the patient was *before* the illness compared with how they were *now* and all the little details that went along with that. The little details really helped with the diagnosis. I felt we were able to connect with the patients better as a result, and that the patients really appreciated that. Since you can't cure a lot of neurological diseases, it becomes about symptom management -- making patients feel and function better -- which I find very satisfying.

Anyway, here's hoping that you won't remain on the wrong side of the stethoscope for long.

Thanks for sharing. It is nice to have a diagnosis, so you can focus on a cure. I don't know much about your syndrome either (I, too, haven't heard of it or don't recall if I have) but you sound encouraged, so I am.

All the fibromyalgias and IBS's are really hitting home for me right now. My daughter is suffering horrible stomach pains, "snot up in my throat mommy - it tastes terrible like when I am sick, and my stomach and head hurt so bad." I have done a thorough exam on her, to rule out common kid stomach ailments like appendicitis and constipation - but hers persist.

It is obviously psychosomatic - she is going through some real emotional trauma during her dad and I's divorce. Rather than blowing it off, I am trying to use it as a channel to help her cry and release. Tonight, she got a little relief after crying, but her stomach pains came back when we were reading a Junie B. Jones book.

I said, "See? Junie B. had a bad day, and her stomach hurt so bad she couldn't eat her cookie. She was mad and sad, and it came out in her tummy. Do you think that could be going on with you, Sicily?"

"What do you mean, mom? I am not mad or sad. Why do I have a reason?"

We talked about the discussion I had with her and John on the park bench earlier in the day. About divorce, and what it means. About how their dad and I both loved them, that it wasn't their fault, and we would both always be in their lives, even if we weren't together. She got mad, and acted out, but eventually listened to me in person and my mom on the phone.

I am learning that psychosomatic pain is as real and scary as physical pain. No more sneezing at IBS, or chronic fatigue, for me. After all, I am the product of a happy, sometimes turbulent, but lasting marriage (the way it should be - it took so long for my dream to die). And I, too, suffered a lot of stomach pain as a kid. I think what a lot of these patients really need is a good psychiatrist. I've got one - weekly now for a year. I need her now more than ever - and hope to back off to twice monthly when I have settled in my new life. She is one of the best things I have going for myself, and I will be eternally grateful to her for the strength and insight she has provided for me.

Damn, this might as well have been a post! Thanks for inspiring me to unload, Tempeh:)

Thanks for the wonderful post. I think one of the most powerful things a health care practitioner can do (or a HCP-to-be, like a medical student) is listen to someone's story of their health problems and treatment. If it's someone they care about, even better. Personalizing the treatment of patients, not only the diagnoses and signs and symptoms, is really important.

It's amazing how much you realize being an empathetic doc is when you're on the other side of the table. I'm about to graduate from medical school, and have not gone through anything nearly as intense as you have, but even minor things can have such a great impact. I went to the health center because I was having horrible headaches for a week and I never get headaches. The first thing the doctor said to me was "what do you expect ME to do about it". I realized then how vulnerable patients are, how badly people have to feel to actually go to the doctor, and to validate those feelings. Thanks for this post.

GREAT post Tempeh. How eloquently you stated these issues. I realized some of these things in a small but real way when I had a minor surgery in the inpatient surgery unit where I work. Wishing you a speedy recovery.

Thank you for sharing Tempeh, it sounds like you have been through a terrible ordeal.

When I returned to work after my hip surgery I found that my experiences as a patient changed me. I was more keenly aware of the fear and frustration in the patient's eye. As if instead of witnessing it I could also feel it. It can be overwhelming at times.

I will also never forget the radiology intern who went the extra mile to staff my MRI with the attending and call me the results within 60 min of getting off the table. You never want to act like a VIP patient, but doctors suffer a heightened level of torment. Ignorance can be bliss for most patients but doctors can imagine a lot more to worry about!

Please know that by writing about your problem, you may have helped some of MY patients.

Traumatic injury to the suprascapular nerve is relatively common in horses. I've seen a number of cases and most do very well. What I wonder now is whether a few cases with no history of trauma were actually an equine version of brachial neuritis. I have never referred one of these horses for EMG/NCS but may now offer this as an option for those owners who want a definitive diagnosis, or whose horses present atypically. Some centers do perform EMG in horses, so it's technically feasible. I also wonder about pain control acutely, though narcotics and horses are not a good combination.

Feel better soon. I agree re: the need for tact and kindness when working with a patient who has an unusual diagnosis. The patient is not just a case report made flesh.

As one who's only ever been on the other side of the stethoscope, I just wanted to throw out there that I actually *like* it when my doctors show excitement, enthusiasm, etc. for the rarity of my condition, the challenges it presents them, etc. I have a fused L hip and spina bifida and when I presented 10 weeks to my maternity doc (who I'd never seen before) and she looked over the referral, looked at me, and said "this is going to be fun!", I knew I'd found the right doc for me.

Parsonage-Turner is like the answer to every EMG question and we often stick it in our ddx, especially in diabetics, but I've never actually SEEN it in a real live patient. I probably would have reacted with excitement if I did :(

That said, I'm studying for my orals and one of the things we get graded on as physiatrists is taking a careful history of the patient's previous and current level of function, and especially asking how the pain/disability affects their life. Your story highlights why that's so important.

Thanks for the support, everyone. I am very impressed with psych, neuro, and PM&R who routinely ask the right questions. Gizabeth, I have no doubt that you are doing a fantastic job both as a mommy and a doctor despite the fact that you are going through a divorce. Your daughter may not be old enough yet to be aware that she has a "reason" for her physical sx, though I think your insight is probably right on. Outrider, that is really interesting! So cool when we can share information like this across disciplines (and species)! Fizzy, I probably would have had the same reaction before this experience as a patient. I think it's probably better to save the excitement for later when you are with colleagues or a nonmedical spouse with a high tolerance for hearing such patient stories. As Natalie pointed out, though, not all patients mind having their doctors show excitement about being a "great case". That probably speaks to the importance of knowing where your patient is in his or her course of an illness before you react. If I had been born with this dx, I can imagine that it would likely have been less offensive to have a doctor comment on what a great case it is for her. Or at least I would have become used to such comments. But as someone newly adapting to this diagnosis and the significant fear and losses (albeit temporary we hope) that have accompanied it, I found my doctor's reaction really inconsiderate.

Thank you so much for this post. I am secondly a 27 year old woman seriously considering a pre-med post-bacc, leaving my hard-earned registrar position in fine arts, but FIRST I am patient advocate for my mother who has spinobifida (and a host of other related medical drama.) It meant so very much to me to read this humble and honest entry that I was almost in tears. After all that I have been through with my mother over the years, there is nothing more comforting and inspiring to me than a caring, empathetic doctor. As if I wasn't already addicted enough to your wonderful blog, ladies...

I too have been diagnosed with Parsonage Turner syndrome. I woke up on August 18, 2009 at 2:00am with excruciating pain in my neck. I took a 600 mg Motrin and it did not even begin to relieve the pain. I went to the ER and was given more pain med.was sent home with pain meds. ended up going back to Urgent care. Before I left the UC I was having difficulty moving my left arm. I am left handed, this was very scary for me. The Drs. did not know what was wrong, they ruled out stroke,sent me home with more pain meds. I ended up with paralysis and nerve pain in my left arm. I also have pain in my legs. As of today April 21,2010 I have regained some movement in my left arm, but not full use. This has been a horrible ordeal. I too have seen several Drs. have had four MRIs, cat scan, X-rays ect. trying to find the cause for this. I felt like the Drs. thought I was CRAZY...I felt like maybe it is all in my head! Then I switched to a new Neurologist and he was the one who diagnosed me with PTS. I am currently taking Lyrica because I still have nerve pain, and I don't know how much longer this will continue. I get discouraged at times because of this. Sometimes I feel like I will be this way for the rest of my life. I am 51 and have always been healthy. Just going to the Drs. once a year for annual check ups. From what I have read I will recover...it will just take time. I wish you a quick recovery, you are not alone. Best wishes.

I was diagnosed w/ cancer at 19yo and had it recur at 24 (while in med school). My doctors truly ran the gamut from amazing (my oncologist, each and every time, made the time to answer all my questions regardless of how many times he had already answered them) to a radiation oncologist who coldly walked away from me when I got freaked out and started crying after she listed the potential side effects of taking radioactive iodine.

I am now told that I am a very empathetic doctor and generally patients seem to appreciate that I do care about their stories. I attribute this to the wonderful model my oncologist was and to having the experience of being on the other side of the table.

Renee, You sound like a wonderful advocate for your mother. She is lucky to have you. This experience has been life-changing for me. I have had a hard time putting it into words, but your comment makes me happy that I am trying. Anonymous, I read your comment and was nodding my head all the way through. I am hopeful that you too will recover. My neuromuscular specialist said that almost all patients do recover, but it can take up to a few years. You are still well within that window, so keep your chin up. VIPeds, I'm sorry to hear that you have had to deal with cancer. Twice. Some people truly get more than their share. That is wonderful that you had such a positive experience with your medical oncologist. I think most oncologists choose the field in part because they really enjoy being a source of support and comfort to patients and their families in the midst of crisis. I am sure that you are a better doctor for having had a personal experience with serious illness. Best wishes for your continued good health! Thanks for the comments.

Well said, and yes it is indeed hard-won. Being a doctor always brought on pride and self-esteem in comparison with being a patient, which shows how weak you are and how dependent you are to other people. Doctors need to know what patients are suffering, that's why even being a patient is difficult, but I guess that it is also rewarding in the long run. Hope your doing fine now Dr. Tempeh. God speed!

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